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Ways to get help and support if you've been diagnosed with Parkinson's disease

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Parkinality columnist Julie Walker, of Bishop's Stortford, writes not about parking, but about living with Parkinson's disease in her 50s...

Reassuringly, I could still wiggle my nose and was still 5ft 8in tall the day after being diagnosed with Parkinson's disease (PD).

My PD nurse was trying to be positive by saying that nothing changed when I was diagnosed. After months of medical appointments, with what seemed like unconnected symptoms, I no longer felt like a hypochondriac; this 'thing' had a name.

The impact of a Parkinson's diagnosis is like a concrete boulder being slung into a peaceful stream. The Wise-ish Man, in one of his wise moments, said: "There is more than one victim."

The initial impact causes ripples affecting others: my children now had a mother with Parkinson's, my parents a daughter with Parkinson's and my friends a friend with Parkinson's.

I am often asked why I write. It helps me to work things through, whether writing about a bad experience or attempting to turn a stressful situation into an amusing anecdote for the column.

I hope it also raises awareness, understanding and empathy so that others living with PD and their families feel less alone. If writing ever causes me stress, then I will stop.

When PD is kicking off I often attempt to see the funny side of a difficult situation.

For example, I arrived for an MRI scan stressed. Walking was difficult and I was switching 'off'. I was helped into the scanner by two nurses.

About an hour later they returned to help me. I was fairly confident I was now switched 'on' and was feeling mischievous. The nurses braced themselves to help me, I hopped off the table and strode towards the door announcing "Cured!" I did go back and explain.

Callum Jolly, the boyfriend of one of Julie Walker's daughters, is running the London Marathon for Parkinson's UK (57604427)
Callum Jolly, the boyfriend of one of Julie Walker's daughters, is running the London Marathon for Parkinson's UK (57604427)

If the aliens ever complete their report 'The A to Z of Observations of Life on Planet Earth', sandwiched between octagons (eight uses for eight-sided shapes) and queen (bees and the band) there is every possibility you could find the following stereotypical definition: 'Parkinson's disease is a (currently) incurable degenerative neurological condition affecting older men with a tremor'.

If you're shouting at the page "Parkinson's disease is not just a tremor and that Parkinality bird is not an OAP" then thank you, some awareness has reached you.

Exercise is important for everyone's mental and physical health. It is also essential in the management of PD. Like most people, I need motivation to exercise and, with the increasing cost of petrol and pancakes, gym membership is expensive.

Everyone Active, which runs the leisure centre at Grange Paddocks in Bishop's Stortford, is currently offering free membership to everyone living with PD. All you need is a letter confirming diagnosis.

It also offers free membership for a carer/friend to join you by being linked to your card. As an added incentive, membership includes a discount in the café.

The local Parkinson's support group now meets monthly at the Grange Paddocks café, where they also hold Nordic walking classes. Clock cricket (£3 for an hour's session) is held weekly. It is played seated, is good fun and is accessible to all. Relaxed swimming and table tennis are also available.

Email Claire Uwins at claire.uwins@mac.com for more information about all these activities.

Parkinson's UK is a charity offering vital support through its helpline and website. It also campaigns on behalf of those living with PD about, for example, free prescription charges and its Get It On Time campaign about medication. Find out more at www.parkinsons.org.uk.

The ripples from that diagnosis boulder have reached my daughter's boyfriend, Callum. He is running the London Marathon in October to fundraise for Parkinson's UK. As he says on his JustGiving page, he has been able to see first-hand the impact Parkinson's can have on someone and those around them.

Thank you to him for undertaking this huge challenge, although I'd much rather PD was cured and he could use his training time to eat Snickers. But it isn't and he isn't.

Parkinson's UK relies on fundraising to support its work. Please donate at www.justgiving.com/fundraising/callum-jolly1 if you are able, and share the link to create your own ripples of awareness (other chocolate bars are available). Smashing!

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